35

The HID survey provides an opportunity to observe the circumstances of disabled persons, which are currently poorly known in France. This article is particularly concerned with the disabled persons care and carers, usage of compensatory equipment, factors conducive to institutionalisation, and life in institutions. Care received by disabled persons may be provided by professionals (paramedical personnel or social workers) or by so-called “informal” carers (family, friends, neighbours). The HID survey makes it possible to measure the burden on informal carers: anxiety, labour market exit, restricted activity and loss of privacy, along with moral fatigue and stress, and reported as the main negative consequences of acting as a carer. Compensatory equipment is used by 16% of the disabled population living at home, and 65% of those in institutions. Satisfaction with equipment is much higher among institutional residents than those living at home, where technical assistance often appears inadequate. Several research projects have examined the role of non-medical factors in institutionalization of disabled persons. It appears that the degree of incapacity is not the only contributory factor; indeed, isolation seems to be preponderant. Social activity in institutions is limited. Outings are infrequent and 40% of residents never go on holiday. Furthermore, institutions are typically isolated, far from shopping and transport facilities, which restricts outings, especially for teenagers. Analysis of HID data is just beginning: many aspects of social life deserve further study, particularly as far as children are concerned.